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Diagnosis: Harper was diagnosed with DiGeorge Syndrome (commonly known as 22Q) on March 20. This explains her heart problems, poor eating habits, eye infection, low calcium (possible hypoparathyroidism) and jitters. There are a number of other problems associated with this syndrome such as autoimmune disease, mental / behavioral development delays and disabilities, and thymus abnormalities. However, not everyone with 22Q has all symptoms and many range in severity. They are doing more blood work and ultrasounds today but a majority of figuring this out will take years.
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Harper Rae was born on February 22, 2017 at 7 lbs 2 oz but has been in the hospital ever since. Though she seemed to be doing well her first couple days, one of the pediatricians heard a heart murmur when she was 2 days old. While staff was performing an ultrasound on her, she lost her breath and turned blue twice. She was then admitted to NICU and after a few tests they discovered that she had a heart defect known as ventricular septal defect (VSD). This defect is causing congestive heart failure (CHF) - which means fluid in her lungs, rapid breathing and poor eating habits. On top of all of that, she also had a broken clavicle and jaundice. Thankfully, the jaundice is cleared and her clavicle is healing.
As well, with the help of lasix - a diuretic that flushes her lungs of that fluid - she has improved some. The pediatrician at the hospital said she will go home on lasix for several months and will have to follow up with a cardiologist regularly.
However... on March 08 she seemed to regress a bit. She had a "rythmic shaking episode" that they think was a seizure. They are monitoring her and have performed an electroencephalogram (EEG). They attempted a lumbar puncture (LP) on the 9th but were unsuccessful. They may try another LP on the 10th. The results from these tests are not available yet but we are hoping for the best.
Harper Rae does have insurance and it will cover a lot but there is a good portion it will not cover. There are other growing expenses, as well, and many more to come with her cardiologist visits. Since, the family's income is limited to her dad's VA disability and school funds from the Post 9/11 GI Bill all contributions would be greatly appreciated.
Prayers and well wishes are also appreciated! Thank you.
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Harper Rae was born on February 22, 2017 at 7 lbs 2 oz but has been in the hospital ever since. Though she seemed to be doing well her first couple days, one of the pediatricians heard a heart murmur when she was 2 days old. While staff was performing an ultrasound on her, she lost her breath and turned blue twice. She was then admitted to NICU and after a few tests they discovered that she had a heart defect known as ventricular septal defect (VSD). This defect is causing congestive heart failure (CHF) - which means fluid in her lungs, rapid breathing and poor eating habits. On top of all of that, she also had a broken clavicle and jaundice. Thankfully, the jaundice is cleared and her clavicle is healing.
As well, with the help of lasix - a diuretic that flushes her lungs of that fluid - she has improved some. The pediatrician at the hospital said she will go home on lasix for several months and will have to follow up with a cardiologist regularly.
However... on March 08 she seemed to regress a bit. She had a "rythmic shaking episode" that they think was a seizure. They are monitoring her and have performed an electroencephalogram (EEG). They attempted a lumbar puncture (LP) on the 9th but were unsuccessful. They may try another LP on the 10th. The results from these tests are not available yet but we are hoping for the best.
Harper Rae does have insurance and it will cover a lot but there is a good portion it will not cover. There are other growing expenses, as well, and many more to come with her cardiologist visits. Since, the family's income is limited to her dad's VA disability and school funds from the Post 9/11 GI Bill all contributions would be greatly appreciated.
Prayers and well wishes are also appreciated! Thank you.